Newly Diagnosed Cutaneous T-Cell Lymphoma (CTCL)

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[@LS-fm2zt]

This was an extremely helpful and informative discussion of the disorder. Thank you.

[@ProfessorMarvel]

Thank you for posting this information. My mother just found out she has CTCL. Trying to remain hopeful.

[@uptown3636]

My mother is waiting for her skin biopsy results right now. I think I know what you're feeling--it's very frightening for me. Wishing you peace and your mother good health.

[@zijiali8349]

I've been treated by Dr Shinohara in Seattle. I was in Phase II of CTCL. After 6-month course of UV therapy, my skin improved a ton. I do think CTCL will come back years later or even sooner, but I think with light therapy it won't evolve to cancer that affect internal organs/blood. With treatment there won't be pain and it won't affect your life-span. Hope this gives you some comfort. No pain, no life threatening.

[@uptown3636]

@@zijiali8349 I’m very happy for you! Congratulations on your successful treatment, and thank you for sharing your message of hope.

[@lf9341]

@@zijiali8349 TY. I have had an itchy rash for 4 months. First said eczema, then scabies. Now they are doing blood work. Scared. Can't stand itch and all over body.

[@zijiali8349]

@@lf9341 I did blood test too. It’s part of the diagnosis to ensure cancer isn’t transmitted into blood. It is very rare but they have to do it anyway.

[@Odo55]

Very good video. Recently diagnosed here and yes it does take time for a definitive diagnosis. I admit it's been frustrating and scary. Hearing the C word is upsetting. I'm just glad to know what it is and finally have support and treatment. Thank you smart doctors.

[@lf9341]

How are you doing? I have had an itchy rash that first said eczema, the scabies. I think it is this. I did a biopsy a while ago and bloodwork came out ok. No other symptoms.

[@Odo55]

@@lf9341 I am doing well thank you. My case is considered to be in remission. It stays under control with direct sunlight

[@lf9341]

@@Odo55 Ty so much for answering me! Is this real sunlight or do you go under that Puva light? How long before you were diagnosed? Did a blood test show or many biopsies???? Happy for you!

[@Odo55]

@@lf9341 Thank you so much.Yes, outside direct sunlight. With winter and skin being covered more I could have flare ups. I've already had some resulting with the intense itching, then I use the steroid creams to knock it down. It took over a year and several biopsies to confirm the T cell cutaneous lymphoma, similar to mycosis fungoides. The last biopsy went to Stanford University for a specialized test called a T cell gene cell rearrangement study, which supported the UC Davis pathology report of a T cell cutaneous lymphoma.

[@winniepenny]

Simple, easy to understand, video. Thank you. Recently diagnosed with early stage MF.

[@DS-pl2qf]

Thank you for posting this

[@laurakahn5011]

Thank you for this excellent video!

[@kevanhubbard9673]

I'd guess that it's is mainly discovered once it has become more aggressive as people who have the indolent early phases probably think that they have Eczema or Psoriasis so no biopsies have been done.Doctors don't over diagnose so aren't going to suggest a potentially lethal skin disease like Mycosis Fungoides to someone who has something that resemblances Eczema or Psoriasis.Plus many doctors will never have come across Mycosis Fungoides and the other even rarer T Cell Lymphomas like PCTL NOS, Large Cell Anaplastic, NK Nasal,Sezery Syndrome,etc ..

[@InformedTheology]

Which subtypes of CTCL are curable?

[@angelavaughan9477]

This is all well and good but our 43 year old son was diagnosed with stage four and Sezary Syndrome; I would like to see a video on his needs.

[@rosalindgerber]

what about the root cause?

[@egrafix2006]

Sorry, but the noise in the background is awful and I cannot listen to this.

[@KoguryoKid]

That's right. We came here to be informed, not ENTERTAINED!

[@maryevans1272]

Please help my sister

[@dorothyharland9169]

Here, here@

[@godwinmbre9544]

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